"It is (ME/CFS) like some great constricting snake that denies its victims the final convulsion." Llewellyn King

"A CFS patient feels the same or worse than congestive heart failure. The same or worse than late stage AIDS." Nancy Klimas: View video here.

"A CFS patient feels every day significantly the same as an AIDS patient feels two months before death." Dr. Mark Loveless, AIDS and CFS researcher, in a statement to congress on CFS Awareness day, May 12th, 1995.

Thursday, December 17, 2009

Dr. Nancy Klimas; Aids Researcher and CFS Clinician on XMRV

The first two minutes of this video is all you need to watch to gain an understanding of what it means to be sick with CFS. It's what we all have been trying to tell our doctors, friends and family since we fell ill; but dared not to fearing ridicule and/or just plain disbelief. The rest of the video in its' entirety is posted here at ME-CFS Community.com.

Find more videos like this on ME-CFSCommunity.com

"Immunologist Dr. Nancy Klimas is recognized worldwide for her extensive work with ME/CFS/FM and Gulf War Illness. In her efforts to expand our knowledge and understanding of these disorders, she wears many hats, including: Professor of Medicine-Psychology, Microbiology & Immunology at the University of Miami’s Miller School of Medicine and the Miami VA Medical Center; Director of the Miller School's EM Papper Laboratories of Clinical Immunology and the University of Miami/VA Gulf War Illness and ME/CFS Research Center; member of the federal CFS Advisory Committee (CFSAC); former President and current Board Member of the International Association of CFS/ME (IACFS/ME); a founding editor of the Journal of Chronic Fatigue Syndrome; author of more than 120 peer reviewed articles and three books; and a member of the ME/CFS Fair Name Campaign Advisory Board."

Thursday, December 10, 2009

In response to Hillary Johnson's new blog Article "When did it stop being about you and become all about them?"
And I HIGHLY recommend reading this article, and all the comments at the end.  And of course, her outstanding book Osler's Web.

Thank you Hillary. You're kinda my hero <3

~NOTE~ Slightly edited since posting. 


Thank you for your voice! When the news of XMRV came out, I was... hopeful, for the first time in 13 years. During those years, I had stopped talking about my illness. period. And my friends and family liked that just fine. All i wanted was to be left alone so I could rest. But, they didn't like that. So, I was supposed to not be sick (Don't talk about it either), and participate in family and friend activities that would make me sicker (Ok, there's one brother that doesn't belong in this paragraph, and of course "Mom". :+)). Needless to say, I left town.

Week one of the XMRV announcement, I was euphoric. I started re-involving myself in CFS support and activism related activities online. I read and read and read some more about how this might change 'everything'. I put up a blog, got involved with forums and started talking about 'it' again. I got facebook, and started preparing emails to send out to all my friends and family, to help them understand what XMRV meant to all PWC's. The first mailing, out of 15+ contacts included, all friends and family, I got two 1-line responses. "That's ok", I thought, "They just have to understand it more".

So, during the next month, I sent out more emails, trying to elicit up support and advocacy from them to mail emails and letters to their representatives and congressmen and woman. Letters to the new surgeon general. etc...

I got 'one' response. it said "will do!" Since the announcement, and a total of 4 'emails', I have yet to hear back from any of them with follow up questions and/or interest.

I guess I should have known that would happen, but it floored me. But, after rethinking about one contact, who for years sent me Breast Awareness campaign emails every year, I guess I should not have been so surprised. (And no, she didn't have breast Cancer, nor did any of her friends. It's just that breast cancer was 'real')

My point is: I don't really know what advocacy looks like. Except from your book and blog, and those newly found friends I now confer with daily in the WPI forums. But the CDC's whitewash for the last 20 years has clearly dictated the level of advocacy I could expect from non-pwc friends and family. That, in and of itself, tells the complete story of how Good the CDC has been able to squash us all into the gutters.

So, this month, I have backed off a bit more into shadows again (I too, have been well programed). I know how good a job the powers that be can do, to move the "CFS" XMRV findings into the janitor's closet again. I know how good they are at chewing up anyone who stands in their way of trying to keep things quiet. For example, this week alone, I have read 4 major articles on XMRV. Not ONE of them used the word "CFS" in relation to XMRV. They mentioned how it related to prostate cancer is all. And at the end, they did say, how there could be treatment hope for them, and possibly "For other illnesses as well".

The segments I have seen on TV regarding this are on shows for women and there was an article in Women's Day. (God forbid they should even mention this is a deadly pediatric disease) So, already I can see that powers are trying to distance us from the prostate cancer XMRV findings, and put us right back into the 'women's' trash bin. There's this pit in my stomach that is starting to ache again. There are tiny hairs standing up on the back of my neck.

There is nothing they do not have at their disposal to derail us. They have been at this con job for 20+ years, and they are gooood at it. So make no mistake, people, they are already scheming ways to either discredit the findings, and or scheming a way to save their own asses should the findings be undeniable.

And by the way, when XMRV was found to be in some prostate cancer patients, did the world wait for the CDC to replicate those findings?

I am encouraged to see independent research sprouting up in Norway and arg, now I have forgotten where else. So, even if the CDC does 'decide' they cannot replicate the findings, they will have a harder time explaining to the world why their study is 'the accurate' one. And what happens if/when the findings are not our best hope? I don't know. That does keep me awake some. But proof and evidence I can deal with. Snake charmer activity at the CDC level? Not so much.

If we needed advocacy ever, we need it MORE then ever now. So, I continue to help my family and friends get de-programed. I continue to get out here every day I can sit up to type, and make sure we are not squashed anymore. And I pray people do not sit back now with this announcement, thinking, 'Yay, we win!' Because they aren't sitting back in front of Reeve's water cooler at the CDC. You can be sure if they are not finding ways to dis-credit this, they are making sure they can back paddle at the speed of light to save their own skins. And that, is what makes those tiny hairs on the back of my neck stand up.

- katieann